I was recently interviewed for an editorial in the latest issue of Nature Neuroscience. The editorial is called:
Silencing debate over autism
Despite the lack of scientific evidence that childhood vaccines cause autism, extreme tactics used by those convinced that this hypothesis is correct have been increasingly successful in influencing public opinion and legislation.
In this editorial I am quoted as saying:
Kevin Leitch reports, “I have personally been told that because I am not chelating my daughter, I am a child abuser. That I am a murderer. I have had threats of violence made against me, and a few people have even sent personal hate mail to my seven-year-old autistic daughter.”
I know of four scientists whom I have exchanged emails with who have been targeted by this same extreme group and who had:
1) Threats of property damage made against their homes and property
2) Threats of physical violence made against them
3) Been the victims of concerted email and telephone harassment campaigns to the point where security services have had to get involved
4) Had their associations with entities that merely sound like Pharma organisations misrepresented
5) Been accused, on no basis at all, of fraud
These scientists are staggered that merely performing accurate science has led them to having to (in three cases I know of) inform Campus Police of the places they work at of their movements in order to remain safe.
I’ve also spoken with several paediatricians and doctors in general practice who report belligerence and fury when the doctor tells the parent in question that the ‘test’ the parent has had performed by Doctors Data or some quack lab – at no small cost – is worthless and means nothing. One GP told me xe felt intimidated to the point of pressing the panic button under xyr desk.
How can this happen? In 2007, when our knowledge of science is greater than ever, how can this happen?
First, it happens because these parents are desperate. Or so they believe. Because they have not given themselves the opportunity of moving beyond the ‘grief’ stage and into a practical acceptance, they are still deep in denial and anger. They are lashing out and blaming all and sundry. This is sad. Its a shame but it still utterly unacceptable. These are (apparently) grown adults.
Secondly, it happens because the wider scientific community _lets_ it happen.
As the Nature editorial implies, the scientific community is largely unaware of this type of person. To them, the question was settled long ago and they have moved on. The few researchers still valiantly plugging away with new science regarding the alleged ‘epidemic’ and the role (or lack thereof) of vaccines in autism aetiology, the many GP’s still faced with the increasingly violent response to vaccination and the many mainstream autism parents who really would like science to move on to educational research and the media to move on to pushing for more adult programs are left to try and wrest the agenda away from these extremists.
If you are a scientist reading this or you know of a scientist who operates within the fields of toxicology or autism then please – please become louder.
The scientists on the Hub do wonderful work refuting the poor science of the Geier’s etc but we need to have the big name scientists in their fields commenting publicly on the poor science like the recent Geier paper.
For the scientists still trying to do studies that touch on the autism/vaccine hypothesis, the issue hasn’t gone away. For the millions of autism parents around the world who find themselves having to compete for funding with a set of threatening bullies the issue hasn’t gone away. For GP’s and nurses who have to listen to the threats and screaming fits the issue hasn’t gone away.
The only way to defeat a bully is to stand up to him. I plead with the larger scientific community to come back to the fray where we can be united and face down these enemies of science and autism.
Elsewhere
1) Autism Diva
2) Orac
3) Steven Novella
Left Brain Right Brain 
Here’s an example of intimidation in action.
JB Handley titled this message to a Yayhoo group something like, “Don’t forget to write to the ——- organization”. I have taken out the organization’s name and the women’s names that were included in JB’s post.
“— In EOHarm@y—-groups.com, “bradfordhandley”
wrote:
Here’s my valentine from this morning, you can reach her at:
[woman’s name] @ [organization name] . org (without the spaces):
From: J.B. Handley
Sent: Tuesday, April 11, 2006 10:49 AM
To: ‘[woman’s name]@…’; ‘[second woman’s name]@…’
Subject: From Generation Rescue and PutChildrenFirst
Hi [woman’s name]:
It was a pleasure to read in the LA Times that you are actually a
front for the CDC.
You are spending your time advocating to inject a potent neurotoxin in tiny babies. As I said before, and I think you need now more than ever, may God have mercy on your soul.
J.B. Handley
Co-Founder
Generation Rescue”
JB seems to be a good one for frightening folks with lawsuits, too. The Geiers have sued scientists who made valid criticisms of them. This kind of stuff tends to shut down discussions and pushes some scientists out of the world of autism research out of fear of ‘autism parents.”
Kev, I think the Autism Omnibus might be the key here. The scientists you want to get out their proverbial megaphones are waiting for that decision to be handed down. If (and I hope this doesn’t happen) it goes in favour of the family in the test case, there will be an appeal, and the scientists will be very quick to pounce then because the danger will be in plain view. Yes, to you and I it already is – but as you pointed out yourself they’ve taken the attitude of “The matter has been dealt with”. An actual court decision that goes against that will force their hand.
Of course, we’re all hoping that the Omnibus goes against the family. I personally am expecting it to.
Hi Kev
Please let me know if you received an e-mail I sent to you. Thanks
I have been receiving hate emails and more than a few bullying remarks; I have been following the debate about framing in the science community and made the point about how much mis-information about science is to be found (in regard to the vaccine issue, for instance), and how important it is for scientists to step into the debates. I hope the Nature Neuroscience editorial has a good effect and thanks for your words, Kev.
I think there is something to the argument that some people who display autistic behaviours do so as a result of chemicals that changed their brains.
I don’t think that’s the case for me, or for a number of similar Aspergian people I’ve met.
The thing is, when we were five, especially at times when we didn’t choose to speak, we all looked very similar.
There may well be kids that are helped by chelation or vitamins or any of numerous other things. A particular treatment may address the effect of a certain poison, but not another.
How do we know what to do?
We have a lot to learn, and the more we know, I wager, the less coherent a condition autism will be.
Sorry John, I disagree that any child will be helped by chelation unless they are metal poisoned and can show that poisoning by a standard test for metal poisoning.
I’m getting tired of being on the side with people who are closed minded about any theory but their own pet theory involving thimeresol, conspiracy, chelation and ‘shills’. I just wish they could change their attitudes and fight for some positive studies with substantial premises and goals?
I’ll reuse a line I used on another post. It seems the only kind of studies they are looking for are the equivelent of answering the scientifically equivelent thimeresol question as “when did you stop beating your wife”.
The problem is that there is a general tradition of anti-intellectualism in the States. A lot of people just mistrust and dislike science. So there is a general support for people who attack science. We see the same thing in the creation science debate.
It’s really about the conflict between science and belief systems. If you attempt to attack something that is at the core of a belief, as with evolution or debunking the possibility that vaccines are the sole reason for the pain and suffering their are forces far more complicated in play, people become defensive and seemingly radical…
I also think you see something analagous to the “Stockholm syndrome” reported during kidnappings, and the like.
I mean, here are a bunch of parents who have made heroes out of the very people who, in my view, have victimised them.
It’s a very strange and dangerous phenomenon, and I’m not at all surprised that people who’ve spoken up for otherwise rather simple and overwhelming truths are threatened and vilified in the terms we’ve seen.
But, although I’m not particularly confident that a mere 3-week Omnibus hearing will penetrate the blather which masquerades as science, I do think that for every parent who becomes so bitter and twisted that they go off the rails over this thing, there will be another for whom the penny eventually drops.
Mr Deer, I think you are exactly right. It is exactly like Stockholm Syndrome. Unfortunately, that is how people operate, and there are all too many people willing to engineer a crisis so they can “rescue” the victims and reap the “reward” of being attached to.
The “crisis” is scaring the parents about mercury, then “rescuing” them with the false hope of chelation.
The people who are the victims of the chelation quacks are just like the victims of domestic abuse. They are attached to their abuser and can’t break free, even when it is unambiguously demonstrated that the perpetrator has harmed them.
I’ll admit I’m worried about the parents losing the autism omnibus.
Anytime that you have people who are semi-organized and willing to hold a belief against all reason or understanding, and truly believe that others are actively harming their kids (they aren’t, but the mercury people – some of them anyhow – truly believe that the pediatrician down the street is “poisoning” kids)…well, bad can come of that.
After all – be honest – if you thought someone poisoned your child, wouldn’t you want revenge? If you thought that you could do something to stop 26,000 needless poisonings, wouldn’t you?
That’s what scares me. There are some in the mercury movement who may start targetting the CDC, law firms, school districts, pediatricians, county public health nurse offices, etc, in physical, real, and violent ways. I fear for peoples’ safety. Sure, most even mercury parents wouldn’t do any such thing – just as most people who are against abortion would never dream of blowing up an abortion doctor or clinic. But there are some out there – and I fear that the lawsuit they’ve put all their hope in is not going to go their way.
_”I’ll admit I’m worried about the parents losing the autism omnibus.”_
Yeah, me too.
The part of me that respects the necessity for decent science is concerned with accuracy.
However, I am really worried about what losing that case might do to some of these people. There’s a powder keg of hope, conspiracy, paranoia and false expectation thats building.
Might it be better if they win the case? I don’t know. But like you Joel, I worry what will happen if they lose it.
Greetings from California. Yesterday was “Take Back the Blog” day– taking back from oppression and intimidation.
I listed sexism, racism, and homophobia but I guess I should have listed anti-scientism too.
I believe that the court will judge the case based solely upon the evidence presented and not consider the negative reaction of either party to the decision. At least that is my hope.
The federal court system has handled organized crime, professional terrorists and any number really bad people. I would hope that threats from the hateful horde will be met with severe responses.
Kevin, I did not say any child would be helped by chelation. I said, some might.
My point was, many different things may cause autistic behaviour. One of which MAY be heavy metal poisioning.
I think we’re going to find many things that cause autism, and “cures” for one person’s cause may be “killers” for someone with another causative agent.
I didn’t know Lenny had a girlfriend. Really?
John Elder Robison, if heavy metals “may” cause autism, TV “may” cause autism as well.
There is no reliable proof that either is responsible for autism however.
Kendra n Lenny,
sittin in a tree, ……..
There was flirting on EoHarm on Valentines Day and in March there was a message that seemed to hve been sent by her brother to teh group by accidnt “Hi Sis,
How was your time in Sacremento? Are you smitten?.”
Then brother mention Lenny, who id in Sacramento.
Kendra didnt say if she wuz smtten.
These scientists should move to Texas. They would probably feel quite a bit safer here.
I used to believe that the Eoharm folks were just misled, misinformed parents who wanted to help their kids. It only takes a few weeks of following their posts to realize that a real cult has developed. How often is the discussion centered on their children? Not much, compared to any other group one can find on the internet. For them, it is all about government, pharmaceuticals, doctors, the media, everybody but them. Its them against the world. And once you remove that last vestige of hope (the hope of being proven right) from that type of person – who knows what could happen? Its a scary proposition, but not one that changes my hope that the truth is more completely established during the Autism Omnibus proceedings. No matter what anyone thinks or feels on the issue, the best-case scenario is for the truth to prevail in court.
The lesson of past vaccine litigation is that there will be a substantial subset of parents who are simply lying on the specific facts of their case.
It’s true that many parents may convince themselves of an association, or be convinced by the cult leaders.
But when you go right into these things, what you find happens is that the mother (and it usually IS the mother), goes down a line which basically says (a) I know the vaccine dun it because that nice Dr X says so, and because a mother always knows; (b) Johnny’s problem came on soon after, but I can’t remember when; (c) our lawyer says that if we say it came on inside two weeks of a shot we might win millions; (d) we sure need those millions; (e) Johnny’s problem came on within two weeks, and whatsmore I remember it, and told the doctor, but the doctor didn’t write it down.
In the only vaccine damage case ever to come to trial in England where the specific facts were heard, the child’s own legal team walked off the job on account of the mother’s perjury. They had to abandon the trial, and hold another one, where the parents were never called and the cases were all dumped, purely on the science. They decided to do it this way because the risk of another mother lying was too great to risk another mistrial and waste of public money.
I’m not saying they’re all liars (or that this necessarily sets the tone for much EoH discussion etc), but the bigger the porky, the bigger the indignation. It’s like how angry shoplifters can sometimes get when they’re caught.
All this said, I’m not so sure about this Omnibus hearing. Surely, there’s a risk that the masters will feel so bamboozled by the thing, and by the mothers sobbing, that they may baulk at just throwing the whole thing out after just three weeks.
I’m told there’s no sign of the plaintiff’s putting up Wakefield (probably because they know he would be eviscerated in front of a judge, finishing them forever), but I’d think it would take three weeks just to get to the bottom of Mark Geier (who they surely must call).
Hi John:
_”My point was, many different things may cause autistic behaviour. One of which MAY be heavy metal poisioning.”_
Sure, it _may_ be. But there are seveal things needed to move that _may_ into a strong candidate.
1) Supporting science. Both epidemiological and clinical. There is none.
2) Some kind of set of symptoms which bear a resemblance to metal poisoning. There are none.
Without these things, there’s nothing to this hypothesis.
Two things,
I get tired of having finding a cause, causes or reasons for autism to be likened to money grubbing suit happy parents. For most of us, nothing could be further from the truth.
There has been some support to the hypothesis of heavy metal burden being a factor in either autism itself of other medical issues, it simply is being buried under the rush to exonerate vaccines and thimeresol.
I personally would like to see some more extensive research into this area without the burden of looking at it as a condemnation of the vaccine program.
As for the zealots keeping the vaccine conspiracy alive, give it up. The louder you yell the more people will not listen, even if you have a valid argument…
Autism does not bear *any* relationship to heavy metal poisoning. They are distinct diagnosises and would NOT be confused.
Do you know of something that disagrees with the above? I’m looking for something credible, I.E. peer reviewed in a mainstream journal, not something on a website or in Medical Hypothesis.
If you think “heavy metal burden” and autism can look the same, can you provide your source for what “heavy metal burden” looks like? Is it a credible source (a website or the “novel form of mercury poisoning” article do not count)? When I look at the symptoms of heavy metal poisoning, I find that other organs are typically affected – in the case of mercury, for instance, it’s the eyes and skin, something that has not been observed on a large scale among autistics.
As for money hungry lawsuit people, I don’t think most parents are in that category either (although certainly a few are). I think it’s the lawyers that are in that category, the lawyers who have a lot invested in whether or not they win some lawsuits against the drug companies. Unfortunately they’ve caused a lot of damage, and we’ve yet to see the full fallout once people realize they’ve been had.
That’s just my point, hypothesis almost implies no proof. I’ll not hand you the straight line for the jokes that you consider some of these labs citing ‘proof’ of heavy metal issues. I just think that there are sufficient questions out there to warrent a proper study. The main point I’m trying to make though is that it be cleansed of this hotbutton issue of vaccination.
There is such a polarization around this that anything done around the study of HM and autism immediately becomes a “see it proves” or “see it refutes” the thimeresol hypothesis…we see where that gets us. I’m certainly glad there are no Planned Autism Parenthood clinics out there…
Exactly what is one of the “significant questions?” In other words, why should someone choose to research metals+autism instead of, say, aliens+autism or TV+autism or vegitables+autism or sunlight+autism or prenatal_care+autism, etc? One can come up with hypothesises all day, but there isn’t enough time to research *all* of them. Thus we should focus on the *probable* and *scientifically plausable* ones if we are after good science. Sure, someone might discover something studying one of the improbable ones, but it’s not very likely.
So, once again, what’s one of “significant questions” and why do you believe it to be significant?
I’m not trying to be difficult, really. But I don’t see a significant question here. I see no reason why I would pick heavy metals as a more likely cause (or even just a among the top 100 or so potential causes) than any of 10,000 other potential causes.
That’s not strictly true. In science, a hypothesis may have a lot of evidence or very little evidence to support it. Boiled down to its essence, a hypothesis is nothing more than a tentative statement about a natural phenomenon that is predictive and testable with further observation and experimentation. The amount of evidence that leads to such statements can vary greatly.
In fact, the hypothesis that autism is a manifestation of “mercury toxicity” has almost no evidence to support it (and what evidence there is is of very poor quality), and there is increasingly abundant evidence that falsifies it.
So the labs that are reporting that there is evidence of HM burden in some children are ALL telling stories out of school. That the people doing chelation (despite the dangers)and claiming significant results are ALL delusional. Why is is such a stretch to consider that there MAY be some merit to the idea? I said sufficient not significant. What would be considered probable and scientifically plausible at this point for a disorder that appears to have so many different aspects, severities, onsets and degrees of recovery?
Where are the studies to refute the possibility that some of these studies, which are granted of poor design quality, don’t warrent further investigation?
livsparents, every published study is unable to find any connection. The only published study showing an “increase” body burden of mercury in ASD individuals (that I am aware of) is the Bradstreet et al paper which showed a whopping 3 micrograms increased excretion following chelation. Is that “significant”? Well, it is the average mercury in 1 ounce of tuna. That “increase” was the average of a large number of children (~200), some of which had zero excretion. Not zero excess, but actually zero excretion. The distribution was highly skewed, so highly skewed that a simple average isn’t a good measure of the data. But that was all the authors would provide. Why? Very likely because a simple glance at the actual data would show that the entire “excess” was due to a few outliers.
A “hypothesis” has to be consistent with data and science that is well known. The “mercury causes autism” idea is not consistent with much that is well known about mercury phsyiology and autism. It isn’t a hypothesis, it is a failed hypothesis.
If all these people claiming “significant” results bothered to write it up, then we could tell if they are lying or not. They have chosen to not write it up. I presume because that would show that they have been lying all along.
Extraordinary claims require extraordinary evidence. So far, there isn’t any that supports the “mercury causes autism” idea except the unsupported statements of those who profit by it.
Lots of parents insisted seritin works.
Others insisted it truly was a result of refrigerator mothers.
Yet others knew their children were abducted and changelings put in their place.
They believed these things very sincerely. However, not one of them has any scientific evidence. Sincerity of belief does not make truth, nor does it raise to the level where yet more research should be done (especially since the research *has* been done).
Evidence against heavy metal “burden”:
1) Autism looks nothing like any form of heavy metal poisoning. Seriously. This is probably the biggest and most common myth about autism – that somehow it looks like mercury (or other heavy metal, or now non-heavy metal aluminum poisoning).
2) Known genetic correlation (90%+)
3) Lack of any significant difference in geographic distribution of autistic people (some areas are more polluted, different cultures have different diets, different nations vaccinate differently, etc)
4) Lack of growing or falling epidemic, despite worldwide toxicity levels going up or down (depending on which toxin you look at)
Basically the studies that have examined populations using a consistent criteria found that autism rates are remarkably consistent among remarkably diverse groups.
In other words, it’s clear that mercury doesn’t cause autism. In addition, no test will sway the true believers anymore than any science would have swayed the Hale Bopp comet cult people. It’s beyond science, all science that disproves their hypothesis is the result of corruption, Bush, and the CDC’s soulless minions of orthodoxy. Etc.
The burden on a metal hypothesis supporter is to show how what we know about autism (for instance the even distribution of autistics world-wide) either doesn’t matter or is wrong. Until that’s done, it’s not worth even entertaining the hypothesis anymore than it’s worth entertaining the idea that autistics really are psychic messengers sent from another dimension!
I suspect that even a well-designed, scrupulously run double-blinded, placebo-controlled study of chelation would fail to satisfy those parents who are convinced that chelation works…unless it showed that chelation works (in which case it would be lauded as a model for all scientists).
Face it – most of the people on EoH are beyond having their minds changed. I once asked a certain infamous EoH poster what it would take to change his mind. His response?
“The CDC would have to admit that they knew that thimerosal was causing autism…”
Now, I’m sure that most of you noticed that his reply was not an answer to my question. In further follow-up questioning, it came out that nothing would change his mind because he was absolutely convinced that he was right and “…nothing can convince me otherwise!”
Likewise, I’m sure that the chelationistas will see the inevitable court defeat as another aspect of the Massive Government Conspiracy.
Lenny Schafer once said that he had given up on science and was hoping for a “big win” in court. Failing that (and it seems likely that it will fail), he and the rest of that crowd will move to the next logical (or illogical) step: politicians.
Look to see a number of large campaign contributions headed toward sympathetic (meaning: needs money) politicians in the near future. In fact, it was probably only the defeat of the Republicans in the last election (Dan Burton and Dave Weldon, autism’s “biggest supporters”, are both Republican and now in the minority party) that saved us from an onslaught of legislation to deflect a potential defeat in the upcoming Omnibus Proceedings.
They can’t “win” in science, because science – in the end – is based on a larger consensus than they can manage (they have so few actual scientists – and even fewer that do real science).
They won’t win (or, at least, not consistently) in the courts, because the courts also value truth and fact over emotion and passion.
But in the legislature, they have a real chance. Politicians (most of them) don’t care about science – they care about elections. And, infortunately, winning elections is about money. And money is something the chelationistas have – and lots of it!
Prometheus
1) Autism looks nothing like any form of heavy metal poisoning. Seriously. This is probably the biggest and most common myth about autism – that somehow it looks like mercury (or other heavy metal, or now non-heavy metal aluminum poisoning).
I’m not saying it is standard heavy metal poisoning, but some other problems with the metabolism with some autistics in relation to HM.
2) Known genetic correlation (90%+)
I agree there is a strong genetic correlation, but what components cause severity differences, different onsets, different symptoms. Seems to me that there is some other environmental influence as well (many scientists who DON’T quack agree on this)
3) Lack of any significant difference in geographic distribution of autistic people (some areas are more polluted, different cultures have different diets, different nations vaccinate differently, etc)
Until we get more reasonable classifications and tracking of those classifications, we really can’t tell if there’s an environmental/geographic influence as well.
4) Lack of growing or falling epidemic, despite worldwide toxicity levels going up or down (depending on which toxin you look at). Have worldwide toxicity levels gone down? Up drastically since 1994? We really have only 10 years of data on this disorder. We really only have 5 years of decent data on the whole of the autistic population.
Please attempt to step back from the vaccination defense mechanism for a moment and look at autism as a complex brain disorder with many different potential gene combinations and potentially many exaserbaters.
You all seem to want to pigeon hole everyone who holds these type of beliefs as saying that ‘mercury causes autism’. I realize that many are saying just that. I and others are not; but we still believe that there could be confounders worth researching…
“I’m not saying it is standard heavy metal poisoning, but some other problems with the metabolism with some autistics in relation to HM”
What “other problems with the metabolism with some autistics in relation to HM” are you referring to? What study? What heavy metal (since each metal does react to other chemicals differently)? Are you talking about some autistics getting a build-up of heavy metals (if so, why don’t they eventually sucumb to what would be a fatal condition?)? Or are you talking about something else?
As for the environmental factor (I won’t call it a trigger since it’s not at all clear it’s a trigger – it could just as likely be an environmental factor that surpresses autism) – and environmental in the “non-genetic” sense, not the pollution sense – I agree that there is such a factor. That’s why it’s 90% and not 100% correlation. It may be the same factor that allows one identical twin to score higher on IQ tests than the other, for all we know (I.E. probably not pollution).
As for your comment on point #3, perhaps that would be a better use of our research dollars right now then, say, a hypothesis that lacks even the basic groundwork and has a lot of evidence against it?
As for “vaccine defense mechanism”, that’s not what is motivating me. What is motivating me is the use of untested and dangerous treatments on autistics (do you know for instance that one chelator used by some mercury proponents – EDTA – actually binds to elemental mercury and forms a compound that is a much more significant neurotoxin than mercury alone?). I am just as against the drug companies as against the mercury moms (and other heavy metal proponents), as they also do plenty of wrong (use of anti-psycotic drugs on autistic people, for instance).
I’ll throw out one more – if you aren’t suggesting it’s vaccine injury, but general environmental poisoning, why aren’t our pets being affected? Cats in particular accumulate heavy metals because of their diet (they eat things further up the food chain that have accumulated more heavy metals). This was noticed for instance in one mercury poisoning incident in Japan:
http://en.wikipedia.org/wiki/Minamata_disease#Outbreak_of_Niigata_Minamata_disease
I’ve skipped about the last half of posts because I wanted to talk about two things mentioned further up.
First – on the Autism Omnibus case. I guess there is some sympathy for the parents in the test case if the case should fail. Fair enough. They have gone so far down a particular track. I guess it depends on the ability to adjust to a failure.
Also – yes. There will probably be a backlash from the mercury poisoning supporters.
BUT!
Kev, if the Autism Omnibus case is successful, it is likely that the said supporters will push for chelation to be made compulsory for all children with an ASD – and maybe adults as well. And if the US does it, expect the lap dogs called Blair (and Howard here in OZ) to follow suit. Do you want Megan to be FORCED to be treated with chelation? Of course you don’t! I think that’s a bigger danger to be honest.
Second – I have to say I agree with the assertion that the mercury poisoning supporters won’t accept Autism is a part of the human race. It’s increase in belief is actually consistent with the increasing influence by relgious groups in the US. People are going back to the church for all the wrong reasons in this case. And even then they will probably get the wrong information – which I thought we would have eliminated a long time ago. Poor interpretations of the Bible, or noticing parts that in fact are way out of date and intolerant.
I noticed – for example – some time ago that a certain loudmouth who I won’t name here that he hated homosexuals on religious grounds.
Religious people have always rejected science – ranging from Charles Darwin, through to the current crop of scientists who know the truth.
Maybe that’s the key, Kev! Tell the scientists that religion is fighting back and threatening to set us back 100 years (theoretically speaking!)
Hi Joel
I have several comments about your comments.However, as you know, the published research on the HM/toxic/essential elements issue is very scarce in autism at the molecular level, although there are many published manuscripts on the topic from the clinical point of view- in terms of imbalances in Ca/Mg/Zn/Cu, for example.
Are you interested to analyze other view, forgeting the CAUSE/CURES discussion?
Kev what is your opinion?
How would one figure out a cat was autistic? No responding to name being called? Check. Repetitive behavior (sleeping/licking)? Check. Social isolation? Check. Uh Ohhh, sounds like we may have a 40-80% incidence rate there for cats!
So, it is your contention that autism is 90% genetic, that this genetic condition is not caused by nor confounded by environmental factors, that these genes are easily identifiable and that these genetics are solely responsible for the various complex manifestations, severity and onset of the autistic spectrum? Plus these genetics are also not responsible for any other medical conditions that could be tied to autism?
I’d buy that research for 900 million dollars if it were that easy. The last time I heard someone mention 90% of autism was attributable to any one thing I laughed John Best off of a blog discussion when he claimed that was the thimeresol/autism rate! Not to say that I consider your comment anywhere near the depths of that type of ridiculousness, I just think that there is much more complexity in autism than can be explained in an ‘almost all’ statement.
I have one maria, definitely, but I need to be sure first exactly what we are discussing.
Are you saying that, putting aside the question of a vaccine/thiomersal/MMR _causing_ autism, you think there is a possibility that a vaccine might have a bad effect on an autistic person that it wouldn’t on a non-autistic person and that this bad effect might impact on an autistic persons peripheral health issues?
Phil
You make two assertions above that I must disagree with:
1. That if on the very outside chance that the plaintiffs in the omnibus case prevail, chelation may become mandatory. I do not see that as possible in the U.S.. So far we have seen only a very small segment of the population commenting on mercury and yes the most radical are the ones getting the press. But trying to pass any type of treatment into law will cause an uproar that would make what they are doing look small. Many people watch the debate and don’t want to get involved because it is nothing short of slander. But tell them “you must do†something, or to try to pass a law dictating a medical treatment; you will hear from them. It won’t happen, no senator or congressman will touch it.
2. That religion is in the way. Part of the problem that I see is that some within the most radical segments have fallen too far away from Christian beliefs and ethics. They are not placing the appropriate value on life with the “cure them or kill them†attitude displayed in their writings. My hope is that the various Christian churches will get more involved with autism.
These are just my opinions, others may have a different view.
Hi Kevin, this is PART of what I am saying relating vaccines (including the accumulative effect of the preservatives, toxoids, attenuated virus and so on that need specific receptors and signaling working efficiently to produce the desired immune answer, being the gut important in the management of). I consider that, depending on the individual, bioaccumulation of toxic elements from all sources and imbalances in the essential ones can be coexisting-related to genetics. The management of xenobiotics (Phase I and Phase II of the liver) of all sources should be properly studied also (and yes, including the impact of PCBs). The impact of herpes and strepts – as concomitant problem to transient immune depression- should be properly addressed.
The problem I consider should be addressed scientifically is how the autistic people-and different subgroups- react to all these. How , at the molecular level, not as has been studied measuring this or that, there can be important differences at the gastrointestinal, immunological, nutritional, second signalling systems, neurotransmitters, methylation, excretion, transport systems ( and the link gut-brain-CNS) to know how the environment affects health in autistics- strongly related to genetic in terms of different combination of polymorphisms.And how in the first years of life immune system can be imbalanced or immature in autism- including the impact of neurotrophins such as BDNF and the prenatal immunological aspect.
And not only a vaccine, I am considering the combination of vaccines-full schedule, full doses the first two years WITH a complete view of the overall pediatric management (introduction of food-what, when-, use of antibiotics, management of non-vaccinal infections in infants)considering that an autistic child is being born with differences in his/her different systems related to a different genetics.
“I’ll throw out one more – if you aren’t suggesting it’s vaccine injury, but general environmental poisoning, why aren’t our pets being affected? Cats in particular accumulate heavy metals because of their diet (they eat things further up the food chain that have accumulated more heavy metals). ”
How would one discover whether a cat was autistic? Not responding when name called? Check. Repetative behaviors (sleeping/licking)? Check. Isolatory behavior? Check. It seems we have a 40-80% incidence rate in the feline population!
“That’s why it’s 90% and not 100% correlation.”
With such a diverse possibility of onset, symptoms and severities, I cannot agree that genetics is the ‘almost all of austism’ that you suggest. Many to most of the scientific community would agree that environment could play an, at the very least, exaserbating role.
Research is needed in this area. You can argue the specifics of vaccines, thimeresol, chelation and any other specific untenable premises and conclusions of the mercury militia. But you must agree that research is needed in the role that enviromental factors play in autism.
AV – on the second point, all I’m hearing from the US when it comes to religion is going back to the old fashioned belief structure when it was fashionable to be intolerant towards those who weren’t “normal” (and tossed them into asylums etc). Now OK – there are other religions around the world that are far more progressive. You’re right. But that doesn’t automatically mean that the ones I’m talking about don’t exist at all.
Second – believe me I don’t want to see chelation become compulsory. My point is that if the Omnibus case is won by the plaintiffs (and I agree with you – it’s most unlikely) there will be a massive push for it by the likes of Generation Rescue – with this decision as a back up. What concerns me is that if the senate and the house won’t do it for the very reasons you are saying – it will become a huge election issue if those GR morons have any say in it. Promote those who won’t make chelation compulsory as “not serious about the Autism Epidemic”. You know – all the scaremongering BS.
Do you see what I’m getting at? OK – maybe I’m scaremongering as well, but I can’t just ignore the possibility no matter how remote it may be. And I don’t think anyone else should either to be honest.
Maria, the level of detail that you are looking for in physiology is simply unknown, even for NTs, even for the simplest animals. Complex interactions of multiple things are extremely difficult to do research on. The reactions are all “coupled”, which means that they interact with each other, and the reactions are all non-linear.
Any system of non-linear coupled reactions is going to be very difficult to analyze. If there are “enough” parameter (that is more than a few), the system becomes so complicated it is essentially impossible to understand or predict in detail. It is like the weather, inherently unpredictable past a certain time.
Physiology is orders of magnitude more complex than the weather. The kind of undertanding you are looking for simply isn’t going to happen for a long long time, if ever. It is vastly more complicated than the weather, and there is far more that we don’t know than we do know. For example, the vast majority of DNA in human cells is of unknown function.
daedalus
There are a lot of published clues that point to several of the aspects that I mentioned. Even more, there are recent publications on toxicology and neuroimmunology that points to several aspects I mentioned. Obvioulsy I am not talking about the knowledge of the details at the level you presented to be in the short range, but the interest should be focused about why many detected ( and published) medical problems are present in autism ( from nutritional deficiencies to immunological problems to epilepsy). BUT there are many aspects that have been studied and that give clues to serious venues of research in autism in immunology and the gut-brain-CNS axis to be properly addressed(since several important polymorphisms to metabolic detected problems).
Physiology is not like the weather.
You can look at the Paul Ashwood manuscript on the immune system in autism, for example. Or about the metabolic, gastrointestinal, nutritional, problems detected in many autistics. Therefore I disagree with you.
It would be possible with the proper consideration of the published science plus the analysis of the anecdotical evidence to design properly formulated hypothesis to test under high standards of science. And this kind of approach, with the focus in the autistic physiology, biochemistry and metabolism , would be IMHO much more productive than the actual one.
Maria, as someone who has looked very extensively into physiology associated with ASDs, there is vastly more that is unknown than it known. I think that most scientists don’t appreciate how complicated physiology is because all of the details are “transparent”. We put cells in a dish, and they grow. Therefore it must be simple. I push a button, my computer comes on, I click on an icon, it works, therefore it must be simple.
It was Mark Twain who said “it ain’t what you don’t know that gets you into trouble, its what you know for sure that just ain’t so.”
Supposing there are all of those “problems” with ASD phsyiology. We don’t know how normal physiology works. Understanding abnormal physiology is likely to be more difficult. Which of those are characteristic of “real” ASDs, and which are idiosyncratic artifacts?
Maria,
I responded to you elsewhere to tell you that I wasn’t sure we disagreed on anything.
The reason for that response is because the things you say do not seem to be particularly unreasonable, but the way you say them, and the insistence with which you push them, seems to me to be incompatible with the reasonable things you say, and I may have just figured out why.
outgroup homogeneity bias
The things you want figured out for autistics haven’t been figured out for neurotypicals, and the only reason to think that they could be figured out for autistics when they are so widely varied among neurotypicals is because of this, probably unconscious, very false assumption:
Autistics are less varied and individual than neurotypicals–if not in individual public presentation, then in biological and other areas.
Imagine, just for a moment, how insulted you would be if men urged the medical community to determine THE way, or the very limited number of ways, in which women respond to things differently from men.
Which also brings up another possibility, and one I’m not sure of from your writing. Do you believe that autistics always respond to the things you are concerned about differently from neurotypicals?
I think that would also be a false assumption, but the primary one is the idea that things still unknown about neurotypicals, about the well-funded majority, can somehow be determined easily, cheaply, and without error for autistics.
livsparents,
The reason I mentioned cats (and other animals) is that some animals respond much more “obviously” to pollution than humans. No, I don’t expect anyone to diagnose autism in cats. However, I do expect to notice neurological issues in cats, *including gut issues* if the heavy metal hypothesises are true.
As for your comment about onset, symptoms, and severities proving that there isn’t a genetic component, that doesn’t agree with the research. The research is clear – there is a significant “genetic component” that is in the neighborhood of 90%. Yes, there’s something else, and, yes, that’s worth looking into. Once again it may be the addition *or* the lack of something else. It may also be random (or similar) – identical twins have different fingerprints because of “environment” but it’s not “pollution” that does that. ( http://www.straightdope.com/classics/a980821.html )
I agree that “environmental factors” need to be looked at related to autism. I disagree with any assessment that these environmental factors are “heavy metals” and/or “pollution” or even “chemical” in nature. It’s much broader than that – so broad in fact that we probably need to start with much more basic questions like:
1) Do autistics “become autistic” or are they born autistic? (some research has been done here which indicates even regressive autistics may have been “born” autistic)
2) Is autism increasing or decreasing or remaining steady?
Etc. These are much more basic questions.
In addition, one might look at things like “What is the difference in the lives of autistics who are happy versus depressed as adults?” Maybe that would tell us what we need to focus on – if our goal is to give autistic people a good life, anyhow.
Hi Zaecus
You said
The things you want figured out for autistics haven’t been figured out for neurotypicals, and the only reason to think that they could be figured out for autistics when they are so widely varied among neurotypicals is because of this, probably unconscious, very false assumption:
Sorry, but you are considering in advance that they are false but you have not allowed me to clarify. Please ask first.
Autistics are less varied and individual than neurotypicals—if not in individual public presentation, then in biological and other areas.
I am soryy but I disagree with you in this point because this has not been enough studied-systematically, scientifically- to have such a conclussion. I do not think so. There are many reports about concomitant medical problems (CMP) many autistic have , and many times they have been demosntrated to be more frequently present than in non-autistics. What neither you nor me can say is for sure how these CMP are related to the autism with the scientific knowledge we have today.
Imagine, just for a moment, how insulted you would be if men urged the medical community to determine THE way, or the very limited number of ways, in which women respond to things differently from men.
First, for me this comparison has not place in this discussion, IMO , and Second I have not been insulted nor for a moment when aspects inherent to my condition has been explored by research community to ameliorate aspects inherent because of individual biology to my condition ( for example PMS).
Which also brings up another possibility, and one I’m not sure of from your writing.
Do you believe that autistics always respond to the things you are concerned about differently from neurotypicals?
Thank you for asking, because you misunderstood me.
I consider that what today is considered “autistic genetics” has been with us from centuries ago. What I consider is that certain combination of polymorphisms provide susceptibility to certain combinations of stressores to the immune, gastrointestinal systems or CNS/brain. The potential stressors have been different at different times and the answers were different at different times and the societies were totally different in time in the view of autism, such as we know today.
What I consider that , such as there is a genetic variation in humanity there are also susceptibility variations to the different stressors in time ( different in kind of exposure to infections, xenobiotics and the kind of chemical/emotional environment, kind of nutrition and access to what today are considered hygienic standards of life).Under these ideas ALWAYS and NEVER has no place in any discussion I consider close to my thinking because absolutisms have no place. Under this clarification not always
but some autistics ( such as my son) respond to the things I am concerned about different than non-autistic. Why, is a matter of the current research.
The main point of this exchange of ideas is that somehow we must consider
a) that we are analyzing research and knowledge that is changing in time
b)that the status of a) requires the acceptation of some ambiguities until the answers were obtained.
This kind of situation requires an equilibrium that I assure you I try to maintain constantly.
I think that would also be a false assumption, but the primary one is the idea that things still unknown about neurotypicals, about the well-funded majority, can somehow be determined easily, cheaply, and without error for autistics.
I have never said that. What I said is there are research avenues that could give answers about the importance/relevance of the CMP in autism- and how these CMP impact autistic people life´s quality.
And this is a world of difference.
1) Do autistics “become autistic†or are they born autistic? (some research has been done here which indicates even regressive autistics may have been “born†autistic)
2) Is autism increasing or decreasing or remaining steady?
These are CRITICAL questions to ask, especially if we can determine different phenotypes (can I call them phenotypes without crossing the line between disorder and dis-ease?) within autism. I think onset mainly because I am biased in that one of my girls regressed severerly while the other appears to have been more ‘born’ with autism. I also think onset would be easier to determine and perhaps we can see similarities in the different subgroups.
I find the homogenous classification of autism to be a major barrier in the discovery of what is actually going on.
I agree that the genetic component is undeniable, perhaps the 90% you mention, but not the sole reason as you also pointed out.
Maria,
My apologies for not knowing your language. If I did, I would certainly be trying to use it in order to avoid the miscommunication now occurring.
“Sorry, but you are considering in advance that they are false but you have not allowed me to clarify. Please ask first.”
The paragraph you are responding to ended in a colon, indicating that the next line was what I was referring to:
(Autistics are less varied and individual than neurotypicals—if not in individual public presentation, then in biological and other areas.)
In other words, this is not my argument. It’s yours.
It’s the only logical argument that I can pull from the statements you make. Unfortunately, though logical, it’s false because it represents a bias.
Before we can determine how autistics ‘differ’ from, neurotypicals in the ways you want examined, we must first determine what the baseline for neurotypicals is then -assume- that autistics will vary.
I could be wrong.
“I have never said that. What I said is there are research avenues that could give answers about the importance/relevance of the CMP in autism- and how these CMP impact autistic people life´s quality.
And this is a world of difference.”
I don’t know what things are like for autistics where you live, but if you think that referring, as I did, to the rights of other groups (women in this case) has no place in the conversation, then we have a serious breakdown in communication.
What you want investigated is important, but it is not and cannot be, the primary focus of neurodiversity. First, autistics must be accepted as human. Second, we must be accepted as people. (two very different consepts) Last, we must be expected and allowed to participate in decisions made about us, including research decisions.
Until those three points are reached, most of the information collected and analyzed about us will be used against us, even if the people doing so think they have our best interests in mind, especially if they just want to improve our quality of life.
Maybe, where you are, autistics are considered to be fully human and real people. I have never heard of such a paradise. Arguments are made that the USA considers us to be fully human and real people, but Hillary Clinton introduces legislation with the intent of wiping out all autism all across the spectrum. Actions do not match the words. Until they do, seeking answers cannot be as important as figuring out the right questions to ask.
If you want to argue science, I will get out of your way -unless- your arguments of science get in the way of my arguments of equality. Because science has been used for a very long time to prove that people are subhuman, and I’m not going to let anyone ‘research’ me into being something that doesn’t have the right to exist.
(No offense intended, as I am simply curious about adding it to the list of languages I should learn, what is your first language?)